Patients & Patient organisations

The LOS Registry is a pioneering initiative focussed on understanding the long-term impact of blood transfusions on patient health. Patients and patient organisations that participate in it will benefit from numerous advantages.

Improved quality of life

The LOS study aims to develop tailored transfusion practices by identifying risk factors and the prevalence of long-term adverse transfusion reactions. This will lead to safer and more effective blood transfusions, with early detection and prevention of potential adverse reactions ensuring better patient safety and preventing long-term loss of quality of life. The registry data will enable precision medicine approaches that allow healthcare providers to customise transfusion practices based on individual risk factors and patients’ long-term health outcomes. This approach helps to identify vulnerable patient groups and ensure that high-risk patients receive the most appropriate treatment.

Informed participation and active role in research

One of our goals is to provide medical education to all people, especially patients, in the field of blood and transfusion medicine. Soon, participants will have the opportunity to sign up for a newsletter to receive expertly prepared information about transfusion medicine that will help them understand and shape their own healthcare. Regularly updated information about our research in plain language will keep patients informed about the progress of the trial and any new findings relevant to their health. Patients will have the opportunity to participate in a major scientific project and play an active role in the advancement of transfusion medicine. By sharing their health data, participants help to improve the quality of care for future patients, fostering a sense of contribution to public health.

Comprehensive health monitoring and data protection

The health status of participants is monitored over a period of 30 years, providing valuable insights into the long-term consequences of blood transfusions and health development. Annual self-report follow-ups provide a continuous assessment of health and well-being and can be an important indicator for treating physicians in the event of unfavourable developments. The study adheres to strict data protection regulations and ensures that patient data is handled and stored securely and in accordance with GDPR standards. Patients’ personal and medical data will be treated confidentially and strict measures will be taken to protect their privacy. Participants are provided with clear and comprehensive consent forms detailing how their data will be used and protected to ensure that patients’ rights and privacy are prioritised during participation in the study.